A TWIN daughter born with an incurable hole-in-the-heart condition has been described by her mum as ‘an amazing little fighter’.
Vicky Kenyon has been warned by doctors that her four-year-old daughter Jennifer may not survive into her twenties.
But she said the child, who has had to have open heart surgery three times, was an inspiration who had battled since birth against the rare and complex defect.
Vicky, speaking out as part of Congenital Heart Defects Awareness Week, said: “The thing is with heart defects, you just have time - and not a cure.
“We don’t really know how long Jennifer will live, but doctors say she may reach her teens or twenties.
“The words you often hear are ‘only time will tell’ so we just take one day at a time.”
“There are days when I look at the children playing and feel sadness, and I think how can one twin be so healthy and another so poorly?
“On the other hand I don’t want to dwell on the dark side and I feel lucky that she is surviving.
“And there are times when it gets hard, but Jennifer is strong and just takes things in her stride. She is very brave and plays like other children her age.”
Vicky first discovered Jessica’s condition during her 20 week pregnancy scan.
She said: “During my pregnancy the four chambers of Jennifer’s heart were’t detected so we knew it wash’t good.
“When she was born it was surreal because we had to care for one baby who was healthy and for one baby who was sick.
“The past four years have been a rollercoaster. But she has had the operations and doctors say she is an amazing and brave little fighter.”
Jennifer, a Saint Oswald’s RC Primary School pupil, has a number of problems that contribute to her heart defect and regularly travels to Birmingham Children’s Hospital for appointments.
When she was born her heart walls had not formed properly and the arteries which carry blood away were positioned back to front.
She suffered a stroke when she was just six-weeks-old and has had to undergo open heart surgery to help prolong her life.
Because of the stroke, Jennifer has a weak arm and leg, cannot walk very far and uses an ankle splint.
Jennifer’s healthy twin, Trinity, now helps care for her sister who wears ‘a plaster on her heart’ and has just one ventricle.
Vicky, along with her partner Leroy, aim to raise money for Lagan’s Foundation and Patches charity that will help prolong her daughter’s quality of life and offer respite to other parents who are raising children with similar conditions.
The mum-of-four, of Broadfield Road, Accrington, has dyed her hair red to raise money for the charities and awareness of how heart defects can affect families.
Vicky said: “Leroy and I talk to other parents who are going through the same and it’s hard.
“Now that she has had her third operation, her friends now think she is ‘fixed’, but she isn’t really and other parents need to be aware of the condition.”
Currently one in 100 babies born will have a heart defect, and there are more than 35 recognised heart defects worldwide.
Only 35 per cent of defects are picked up in the womb.
Vicky said: “If all babies were offered a non invasive pulse - ox test, 24 hours after birth, detection rates would rise to 85 per cent and it could save lives.”